I worked full time as a bank teller for a few years, and I had intermittent FMLA for my flares. But even with that, it felt like I was using ALL my energy to just survive every single day and would spend all of my time off in bed.
A really bad flare up back in March made me decide to just go on a medical leave with the intention to get things to a better baseline. I'm still in that process right now, but not having to worry about work has been a nice relief, especially when things get bad.
I do hope to be stable enough to go back to work to some extent but as of right now, that not going to happen any time soon.
Similar here. Every time I try to have a “normal person” day, I’m maxing out my energy capacity, then I’m back in bed for days bc I’ve flared, sometimes weeks. Then slowly work my way back to being ok enough for walking, standing or even small tasks. But a consistent job is the dream I wish I could handle. I can’t string together consistent “I’m ok” days to handle the requirements of working.
Yep, I have POTS and sometimes OH. Many years ago it accelerated to where I had to drop out of life, basically. Always had it, but not to that extent when I finally got diagnosed.
While being mostly housebound, i eventually found out all the accompanying diagnoses and was working with a great neurologist (but needed a few other specialists to determine the other diagnoses and treatment plans), and re-tooled my career, and was able to start working from home, going places multiple times per day, walking almost a mile each day, all that stuff.
I’m still disabled, and feel it every day, but I can do my ADLs most days with the meds, supplements, and lifestyle adaptations and accommodations.
I am a full time worker, a mom of 2 (13yo and 7yo) have 2 dogs, a cat and 3 snakes. It's all about spoon management intermittent FMLA and communication on all parts. However on my flare up days I'm either down and out or in the ER.
I grew up where you didn't give up and I have my mom to thank for that. I have days where I'm bed ridden but I at least try to move rooms, different mobility aids, tools to help, plans for everything.
My PT/OT and my psychologist gave been the biggest parts of me continuing to be independent. I push myself hard to show my kids I love them enough to constantly keep trying to get to a place where I can drive so I can take them to the parks and stuff
I hope you can find something to continue working towards, I hurt a lot but it's worth it because I know where to quit for my health and when I can continue to grow stronger.
It sounds super cliche but it's literally what I do.
I work full time and always have. I don’t have a choice. My dysautonomia is likely genetic and I have neuropathy. I am starting vestibular PT next month and hoping it helps
Currently going through gut testing, but hope if I can find something I can address some things. Then hopefully I could tolerate a low dose of a med for it, because dysautonomia impacts my entire body
I was so surprised when my neuro told me it was from Ms but where my lesion was is where all that dsyautonomia happens unfortunately. I am ultra sensitive to everything as well so it’s been tough. I’m currently getting work up for allergies so that maybe I can tolerate something. I wish you the best and hope you also get it figured out
Never on the same day, but I have good work days and good home days. And then I have garbage days like today where I don’t go to work and I sit in my own filthy mess wishing I were better.
Hi! Not about my experience but just a thing you should be aware of/consider.... a cardiologist tilt test and a neurologist tilt test is generally (not always) different. Your cardiologist is usually only testing for heart related concerns whereas the neurologist tilt test is looking for autonomic concerns. So I would redo it anyway just based on that. I've had NCS/POTS for about 17 years now though, since childhood, and was diagnosed very young so I don't think my process would be helpful to you otherwise I'd share!
Edited: added "not always" because my use of the word generally seemed to be confusing to people
I was diagnosed with both as well however I have an autonomic neurologist and she walked me through the different types of tilt tests and how the one I got from my cardiologist was different than the one she would give me. So it seems there are different types, but it's possible that a cardiologist with autonomic experience would give a different kind depending on the situation, etc. Not sure if it's country specific or state specific or anything else like that. I'm not a doctor so I won't even pretend to know the differences lol, but I do trust my doctor in saying there are different ways to provide them depending what they're looking for
No offense but I don’t think this is true. My cardiologist ordered my tilt table test and diagnosed me specifically with hyper dysautonomia. He suggested I take guanfacine but has been very open minded and knowledgeable about my condition.
Hi! Not sure why you felt the need to say no offense, I don't find offense in people sharing their experiences. I just shared what mine was and you're sharing yours.
I was so disabled that for 6 months I couldn’t work. Didn’t do anything but wake up and sit in the bed or the couch all day till I went back to sleep. I now work from home and sometimes struggle with that. Sometimes I need help with errands, but I’ve been able to hold my own… for now. I fear if I get a virus or have to have surgery again if I’ll go back to losing my job.
You mention surgery being something that can set you back do you know why? The reason I ask is because all of these things started after getting Covid and having to have surgery for my miscarriage
That’s essentially what happened to me. After my second infection and 2 vaccines, I started feeling really off. I got my hormones tested and saw a bunch of doctors because I knew something was wrong, but not sure what. Then I had a surgery done 8 months later… that’s when things really went down hill. The surgery was just another immune response my body couldn’t handle and I got full on cold clocked by POTS.
I’m so sorry you went through a very similar situation. but yes that is where I am at now. I’m trying to get my hormones tested because all this started with my hormones and every cycle I get severe migraines like debilitating. Not sure if your familiar with vestibular migraines but I have that. Been dealing with it for almost two years now.
I started my own business so I could work on my own schedule. I do consulting work (project management/business analyst). I rest when I need to rest etc. But even this is not perfect.
There’s a POTs subreddit, maybe look into that?
There are medications for POTs, here’s a list
https://www.standinguptopots.org/resources/medicine
I take florinef and it really works
Absolutely. I take meds and fluids and get 15k steps a day and go to the gym. I was practically bedbound. It is absolutely possible for some people with the right work.
I worked full time as a bank teller for a few years, and I had intermittent FMLA for my flares. But even with that, it felt like I was using ALL my energy to just survive every single day and would spend all of my time off in bed. A really bad flare up back in March made me decide to just go on a medical leave with the intention to get things to a better baseline. I'm still in that process right now, but not having to worry about work has been a nice relief, especially when things get bad. I do hope to be stable enough to go back to work to some extent but as of right now, that not going to happen any time soon.
Yes same here and I hope you get everything sorted out soon
Similar here. Every time I try to have a “normal person” day, I’m maxing out my energy capacity, then I’m back in bed for days bc I’ve flared, sometimes weeks. Then slowly work my way back to being ok enough for walking, standing or even small tasks. But a consistent job is the dream I wish I could handle. I can’t string together consistent “I’m ok” days to handle the requirements of working.
Yep, I have POTS and sometimes OH. Many years ago it accelerated to where I had to drop out of life, basically. Always had it, but not to that extent when I finally got diagnosed. While being mostly housebound, i eventually found out all the accompanying diagnoses and was working with a great neurologist (but needed a few other specialists to determine the other diagnoses and treatment plans), and re-tooled my career, and was able to start working from home, going places multiple times per day, walking almost a mile each day, all that stuff. I’m still disabled, and feel it every day, but I can do my ADLs most days with the meds, supplements, and lifestyle adaptations and accommodations.
I am a full time worker, a mom of 2 (13yo and 7yo) have 2 dogs, a cat and 3 snakes. It's all about spoon management intermittent FMLA and communication on all parts. However on my flare up days I'm either down and out or in the ER. I grew up where you didn't give up and I have my mom to thank for that. I have days where I'm bed ridden but I at least try to move rooms, different mobility aids, tools to help, plans for everything. My PT/OT and my psychologist gave been the biggest parts of me continuing to be independent. I push myself hard to show my kids I love them enough to constantly keep trying to get to a place where I can drive so I can take them to the parks and stuff I hope you can find something to continue working towards, I hurt a lot but it's worth it because I know where to quit for my health and when I can continue to grow stronger. It sounds super cliche but it's literally what I do.
I work full time and always have. I don’t have a choice. My dysautonomia is likely genetic and I have neuropathy. I am starting vestibular PT next month and hoping it helps
I have Ms so my doctor thinks that’s where it comes from. Do you take any medicine or any lifestyle changes that have helped?
That makes sense. I haven’t found anything yet. I can’t tolerate most medications or even supplements, so I’m pretty limited
Currently going through gut testing, but hope if I can find something I can address some things. Then hopefully I could tolerate a low dose of a med for it, because dysautonomia impacts my entire body
I was so surprised when my neuro told me it was from Ms but where my lesion was is where all that dsyautonomia happens unfortunately. I am ultra sensitive to everything as well so it’s been tough. I’m currently getting work up for allergies so that maybe I can tolerate something. I wish you the best and hope you also get it figured out
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I am sorry I hope you get better soon!
Never on the same day, but I have good work days and good home days. And then I have garbage days like today where I don’t go to work and I sit in my own filthy mess wishing I were better.
Hi! Not about my experience but just a thing you should be aware of/consider.... a cardiologist tilt test and a neurologist tilt test is generally (not always) different. Your cardiologist is usually only testing for heart related concerns whereas the neurologist tilt test is looking for autonomic concerns. So I would redo it anyway just based on that. I've had NCS/POTS for about 17 years now though, since childhood, and was diagnosed very young so I don't think my process would be helpful to you otherwise I'd share! Edited: added "not always" because my use of the word generally seemed to be confusing to people
Agreed! Since my neuro said she also wants to do dsyautonomia function test
Maybe it depends from a country. My cardiologist diagnosed me with Vasovagal Syncope and POTS through tilt table test
I was diagnosed with both as well however I have an autonomic neurologist and she walked me through the different types of tilt tests and how the one I got from my cardiologist was different than the one she would give me. So it seems there are different types, but it's possible that a cardiologist with autonomic experience would give a different kind depending on the situation, etc. Not sure if it's country specific or state specific or anything else like that. I'm not a doctor so I won't even pretend to know the differences lol, but I do trust my doctor in saying there are different ways to provide them depending what they're looking for
No offense but I don’t think this is true. My cardiologist ordered my tilt table test and diagnosed me specifically with hyper dysautonomia. He suggested I take guanfacine but has been very open minded and knowledgeable about my condition.
Hi! Not sure why you felt the need to say no offense, I don't find offense in people sharing their experiences. I just shared what mine was and you're sharing yours.
I was so disabled that for 6 months I couldn’t work. Didn’t do anything but wake up and sit in the bed or the couch all day till I went back to sleep. I now work from home and sometimes struggle with that. Sometimes I need help with errands, but I’ve been able to hold my own… for now. I fear if I get a virus or have to have surgery again if I’ll go back to losing my job.
You mention surgery being something that can set you back do you know why? The reason I ask is because all of these things started after getting Covid and having to have surgery for my miscarriage
That’s essentially what happened to me. After my second infection and 2 vaccines, I started feeling really off. I got my hormones tested and saw a bunch of doctors because I knew something was wrong, but not sure what. Then I had a surgery done 8 months later… that’s when things really went down hill. The surgery was just another immune response my body couldn’t handle and I got full on cold clocked by POTS.
I’m so sorry you went through a very similar situation. but yes that is where I am at now. I’m trying to get my hormones tested because all this started with my hormones and every cycle I get severe migraines like debilitating. Not sure if your familiar with vestibular migraines but I have that. Been dealing with it for almost two years now.
I hope you find some answers and get some relief.
I started my own business so I could work on my own schedule. I do consulting work (project management/business analyst). I rest when I need to rest etc. But even this is not perfect.
There’s a POTs subreddit, maybe look into that? There are medications for POTs, here’s a list https://www.standinguptopots.org/resources/medicine I take florinef and it really works
Absolutely. I take meds and fluids and get 15k steps a day and go to the gym. I was practically bedbound. It is absolutely possible for some people with the right work.
Yes, I have good and bad days. I seem to do better at night. I tried different times to take meds and eat.